Mai multe despre Phillip

Randurile de mai jos sunt scrise de mama lui Phillip, Gabriela. Parintii sunt romani care s-au mutat in Statele Unite ale Americii cu mai bine de 20 de ani in urma, asadar textul l-am primit in engleza. Il voi lasa si asa, pentru persoanele care poposesc de pe alte meleaguri in cautare de informatii despre aceasta trisomie atat de rara. Iata ce povesteste Gabriela:

Cea de-a doua sarcina a venit ca raspuns la multele noastre rugaciuni pentru un nou copil, un frate sau o sora pentru minunata noastra Victoria. Imi amintesc ca l-am sunat pe sotul meu, spunandu-i ca s-a intamplat o minune: asteptam din nou un copil!

Totul a decurs bine, cu rezultate normale la toate testele prenatale. Intr-o seara, am avut o alarma falsa si, dupa ce doctorul m-a trimis acasa, urmatoarele doua zile au fost grele si pline de griji pentru noi. In timpul travaliului, bataile inimioarei lui Phillip s-au rarit si atunci am vazut primele semne de ingrijorare pe fata doctorului. Ne asteptam sa avem un baietel sanatos, dar in primele secunde de dupa nastere a fost luat de langa mine, iar eu ma intrebam oare din ce cauza…Din acele prime momente, am stiut ca Phillip avea sa aiba nevoie de multe rugaciuni, timp si dragoste, pentru a supravietui si a razbate prin viata.

Primele saptamani au fost grele si pline de ganduri negre. Imi amintesc ca Victoria ne spunea „Mama, nu facem altceva decat sa-l ducem la doctor tot timpul!”. La patru luni, un oftalmolog m-a anuntat  ca e orb, nu are vedere deloc. Afirmatia lui mi-a taiat efectiv respiratia. In lunile urmatoare, am vizitat alti si alti doctori. Apoi, terapiile s-au adaugat una cate una, pana cand tot programul nostru zilnic era controlat de „pesoana care vine acum sa il ajute pe Phillip”.

La cinci luni a avut prima operatie, urmate in curand de alte doua. Intrebarea mea initiala, „Ce s-a intamplat?” a ramas timp de 11 luni fara raspuns, pana cand am primit diagnosticul lui Phillip: trisomie 9 in mozaic. Imi amintesc ca, in ziua in care am primit telefonul, am cautat pe internet, gasind un singur paragraf despre conditia lui. Paragraful acela nu ne dadea nici cea mai vaga idee despre ce avea sa devina viata noastra de zi cu zi. Geneticianul care ne-a dat diagnosticul a repetat „Se mai intampla”, ca si cum n-ar fi fost nici mare lucru, nici vina noastra.

Trisomia 9 este o anomalie cromozomiala foarte rara, in care cromozomul 9 apare de 3 ori intr-o celula, in loc de doua ori, cum e normal. Mozaicism inseamna ca unele celule au perechea normala a cromozomului 9, in vreme ce altele au 3 cromozomi. Caracteristicile variaza de la persoana la persoana, insa includ, in general: deficienta de crestere, retard mental, malformatii distinctive ale fetei si craniului, urechi jos inserate, anomalii ale sistemului scheleto-muscular, defecte ale rinichilor sau ale inimii. De asemenea, multi copii au probleme cu vederea, auzul si limbajul. Intrebarea mea, afland toate acestea, a fost: „Exista vreo parte care sa nu fie afectata?”

Phillip a fost atat de mic la nastere, lua in greutate atat de incet, avea urechile jos inserate, un ochisor nu s-a deschis timp de 3 luni si are probleme cu vederea. Nu a trecut nici unul dintre testele de auz, si pana in ziua de azi, nu suporta protezele lui auditive. a avut probleme la rinichi care s-au rezolvat in timp, insa sistemul lui muscular si scheletic este grav afectat. A stat in fundulet la 3 ani, dupa multe ore de terapie, si poarta proteze ortopedice. Chiar si cu acestea, inca nu se taraste si nu sta in picioare. Are reflux gastro-esofagian, insa, de vreme ce manaca bine si ii place mancarea, refluxul nu constituie o problema atat de mare.

Imi amintesc o conversatie cu sotul meu cand, printre lacrimi si suspine, am spus: „Saracutul meu baietel..cat timp va trebui sa mai suferi? Ce viata grea te asteapta?  De ce nu poti sa ai o copilarie normala, ca toti ceilalti copii?”

Sotul meu a raspuns: „Va fi un baietel fericit: ne are pe noi ca sa-l iubim”. In momentul acela, pentru mine s-a aprins o luminita. Perspectiva mea s-a schimbat de atunci.  Phillip avea nevoie de noi sa-l aparam, sa luptam pentru el, sa facem alegeri pentru el, si cel mai mult, sa il iubim.

Phillip are 5 ani, si e un baietel fericit si afectuos. Sunt etape de dezvoltare pe care nu le-a atins inca, si nu stim daca le va atinge vreodata, insa in mod cert ne-a schimpat pentru totdeauna vietile. Ne face placere sa fim in preajma lui, sa vedem cum se bucura cand aude cuvintele lui favorile, „Ernie” sau „pijama”. O adora pe surioara lui mai mare cu jocurile si gadiliturile ei, chiar si atunci cand ea mai zice „Victoria n-are o viata prea usoara”. Ne plac atingerile lui pentru a ne atrage atentia, dar cel mai mult imi place cand spune „Hi, mama”, chiar daca el spune „mama” toata ziua.

Cineva m-a intrebat odata cand ajungi sa accepti durerea de a fi parintele unui copil cu nevoi speciale. „Cand am auns sa multumesc ca este asa cum este, am primit si pace in inima”.

Dumnezeu ne-a binecuvantat intr-un mod diferit, si trebuie sa mergem inainte, atat pentru copii cat si pentru noi, ca parinti.

My second pregnancy came as an answer to many prayers for another child and a sibling for our wonderful daughter Victoria.  I remember calling my husband and telling him that a miracle happened: we were expecting!

Everything went well, with good results on all prenatal tests. One night, we had a false alarm and after the doctor sent me home, the next two days were very hard and worrisome. During the delivery, Phillip’s heart rate dropped and that was the first time I saw concern on the doctor’s face.  We expected a healthy boy, but within seconds after his birth and when I saw him being rushed away from me, my first question was, „What happened?”  From those early moments, I knew down in my heart that Phillip was going to need prayers, time, and love to survive and get through life.

The first weeks were hard and filled with worries. I remember Victoria saying, „Mom, all we do is take him to the doctors.” And, an eye doctor at four months telling me: ” He does not see, he has no vision”.  Some of those statements left me breathless. Over the next several months, more and more doctor visits followed. Then, therapies were added one by one until our daily schedule was controlled by „who is coming to help Phillip next.”

At five months, he had his first surgery, followed swiftly by two more. My initial question of „What happened?” stayed with me for the next 11 months until we received Phillip’s diagnosis: Trisomy 9 Mosaic. I remember the day that we got that call – we searched the internet and found a paragraph about his condition. That paragraph did not begin to describe what became our everyday reality. The genetic doctor who called me just repeatedly said, „This happens,” as if it was no big deal and not our fault.

Trisomy 9 is a very rare chromosonal disorder in which the entire chromosone 9 appears three times rather then two times in a cell. Mosaicism means some cells have an extra chromsone 9 while others have the normal pair. Some of the charactristics vary, however some of the issues include growth deficiency, mental retardation, distinctive skull or facial malformations, low set ears, musculoskeletal or kidney abnomalities and also heart defects. Also many kids have eating, vision, hearing and verbal issues. My question to all this was:”Is there any other part not affected?”

Phillip was small at birth and gained weight very slowly, he has low set ears, one eye did not open for three months and he has vision problems. He did not pass any of the multiple hearing screenings which leaves him even to this day to hate his hearing-aids. He had kidney nephrosis that resolved in time, but mostly his muscular and skeletal systems are affected. He started to sit independently at three years old after many hours of therapy and for his feet he is wearing orthotics afo’s. Even with all these he is not crawling or standing. He has Gerd but since he enjoys food and eats well, the reflux is less of a problem.

I remember having one conversation with my husband and, in between my sobs and tears, looking at Phillip and saying, „My poor boy. How much you will have to suffer. What kind of hard life is ahead for you? Why can’t you just have a normal childhood?” 

My husband replied, „He will be a happy boy because he has us to love him.”  That’s when a light shined for me.  From then on, I changed my views.  Phillip needed us to advocate for him, to fight for him, and to choose for him.  Most of all, he needed us to love him.

Phillip is 5 years old,a happy and loving boy. He has milestones that he has not met or we don’t know if he will ever meet, but certainly having him in our lives changed us forever. Now we get to enjoy being with him, laughing together at his favorite words or things like when we say the word „pajama” or „Ernie”. He adores his big sister with her games and tickles even if she says:”Victoria’s life is not easy”. We love his touches to get our attention but most I have to say, I love to hear him say”Hi mama” even if he babbles mama all day long.

Someone had asked when do you get to accept the pain of a parent with a special needs child, and my reply was: „when I got to thank for him the way he is, that was when I got peace in my heart.”

God has blessed us in diferent ways and we have got to keep on moving foward for our kids and for us as parents.

3 thoughts on “Mai multe despre Phillip

    • Domnul sa va dea sanatate, multa rabdare si dragoste sa-l ingrijiti . Tot ce pot sa spun Philip e un copil special venit de la Domnul de ce ati fost voi alesi sa fiti parinti lui numai Domnul are raspuns, dar mare va fi rasplata voastra. Domnul sa va binecuvinteze intreaga familie.

  1. Pingback: Luna Trisomiilor | Caiet pentru casa mea

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